{"id":49127,"date":"2020-11-27T19:11:00","date_gmt":"2020-11-27T18:11:00","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=49127"},"modified":"2020-12-02T23:08:52","modified_gmt":"2020-12-02T22:08:52","slug":"miles-sibley-we-need-to-change-the-hierarchy-of-evidence-based-medicine","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2020\/11\/27\/miles-sibley-we-need-to-change-the-hierarchy-of-evidence-based-medicine\/","title":{"rendered":"Miles Sibley: We need to change the hierarchy of evidence-based medicine"},"content":{"rendered":"

In July 2020, the Independent Medicines and Medical Devices Safety Review published a report entitled \u201cFirst Do No Harm\u201d<\/span>.1 <\/sup><\/span>Also known as the Cumberlege Review, the report set out extensive evidence of avoidable harm in healthcare. It described \u201cheart wrenching stories of acute suffering, families fractured, children harmed\u201d. The suffering had occurred over years, even decades.<\/span><\/p>\n

The harm was avoidable because patients and families had repeatedly spoken out about the ill effects of the treatments they had received. But no one had wanted to hear them.<\/span><\/p>\n

In a letter to the Secretary of State of Health and Social Care, Baroness Cumberlege (chair of the review) said, \u201cThe healthcare system\u2026 does not adequately recognise that patients are its raison d\u2019etre. It has failed to listen to their concerns\u2026 and has too often moved glacially\u201d<\/span>.2<\/sup><\/span><\/p>\n

The words \u201chealthcare system\u201d are important. The NHS is full of dedicated staff who, at a one-to-one level with patients, offer deeply personal and compassionate care. But too often the system as a whole seems institutionally deaf to the patient voice.<\/span><\/p>\n

Taking Cumberlege as its starting point, The Patient Library\u2019s latest report, <\/span>Inadmissible Evidence<\/span><\/a>3<\/sup><\/span> reveals a double standard in evidence-based medicine. Medical evidence is respected, and built into professional training and practice. Evidence based on patients\u2019 experience, described as \u201canecdotal\u201d or \u201csoft\u201d evidence, is all too often ignored.<\/span><\/p>\n

It was ignored at the <\/span>Mid Staffordshire NHS Foundation Trust<\/span><\/a>,\u00a0where, in the words of Sir Robert Francis, the Board \u201cdid not listen sufficiently to its patients”<\/span>.4<\/sup> It was ignored at <\/span>Morecambe Bay<\/span><\/a>,5<\/sup> where patients\u2019 concerns about harms in maternity services simply disappeared within \u201ca pattern of failure to recognise\u2026the problem, with, in some cases, denial that any problem existed\u201d. The same kind of pattern occurred at <\/span>Southern Health<\/span><\/a>,6<\/sup> and at <\/span>Gosport<\/span><\/a>,7<\/sup> and in the Northern Ireland\u00a0<\/span>hyponatraemia scandal<\/span><\/a>8<\/sup><\/span> and at <\/span>Cwm Taf<\/span><\/a>.9<\/sup>\u00a0 It seems likely that ongoing investigations at Shrewsbury & Telford10<\/sup><\/span> and East Kent11<\/sup><\/span> will reach the same basic conclusion: that when things go badly wrong patient experience evidence is deemed inadmissible.<\/span><\/p>\n

Over and over again, our evidence-based healthcare system has not wanted to accept patient feedback as evidence. And so, over and over again, patients have been harmed\u2014unnecessarily, and in large numbers.<\/span><\/p>\n

It doesn\u2019t have to be this way. We\u2014the Patient Experience Library\u2014<\/a>are on a mission to put patient experience work on the same evidence-based footing as clinical work.<\/span><\/p>\n

We started by <\/span>setting up the library<\/span> as the national evidence base for patient experience and involvement. We have gone on to develop <\/span>analytical tools<\/span><\/a> to help NHS staff find and make sense of patient feedback. We routinely <\/span>disseminate research findings<\/span><\/a> in formats that can be easily assimilated by busy professionals.<\/span><\/p>\n

But we want to go further. We want to see:<\/span><\/p>\n